22 April 2014

While I was in New York I spent an afternoon with my good friend Rick Guidotti - former fashion photographer and founder of Positive Exposure. Rick shares the beauty in appearance diversity through photographs.

I first met Rick in Melbourne when he was a guest and I was a judge of the Other Film Festival in 2012. Rick's work made me want to do even more around appearance activism - and so I have. We became great friends and I'm so glad I got to see him again in NYC.

Rick talks a lot about the need to showcase people with visible differences and medical conditions as people first, not as textbook specimens. He doesn't want people to forget they're different but to embrace their difference and show the world their beauty.

He wants viewers of his photographs to "Change how you see. See how you change."

I saw Rick at work, laying out pages for a book and talking with his staff about plans for his fundraiser next month. He is so passionate and proud of his work - especially the people he's photographed.

We did a fun video that afternoon - you can see how happy he makes me here!

Part of his art is making the people he photographs feel so comfortable. He is so lively and happy that you cannot help feel relaxed, confident and beautiful when being photographed. I think he helps bring that inner beauty to the surface.

Rick has photographed big time supermodels - and he treats everyone he photographs like a supermodel.

When he photographed me, I didn't worry about my hair being messy, the skin on my clothes or how red my face was. I just followed his lead, smiling and posing. The time we spent together made me feel so uplifted, on top of the world. And his compliments about my appearance and personality during and after the shoot was so amazing. I'm not vain but Rick showed me it's ok to see beauty in myself.

I love these photos!

Looking at these photos I see something that perhaps others see in me. I see myself sparkling.

This is also a great time to tell you I will be doing the Ichthyosis Awareness Month Blog Project again this May, like I did last year. I will be sharing stories of amazing people (and one non-human!) who experience Ichthyosis - patients, parents, partners and support group leaders. I hope that you'll enjoy and share the stories as much as you did last year.

20 April 2014

I've been catching public transport here in NYC. It's really cheap, safe and relatively quick and reliable (though the trains I catch aren't running this weeknd!).

There are beggars on every train trip - while I wouldn't usually do this, I've been saving my coins to give to them. It's so cold here and I do hope they can use it to buy a warm drink inside somewhere warm. There are also disabled war veterans - carrying their veteran cards asking for help. They talk about how they've fought for their country and have returned, forgotten and in need.

Last night a group of men got on the train and announced they were raising funds for their singing group. And then they started to sing a song acapella. It was a treat. Commuters looked up, took their earphones out and listened. And they paid the singing trio - they certainly deserved a few dollars.

Then there are preachers. I don't see that much in Australia. On a bus ride through Brooklyn, a woman spent about 15 minutes on an evangelical rant, encouraging us to approach Jesus to be saved. While she annoyed me and I'm sure others on the bus, no one told her to stop. That no one spoke up showed great respect and restraint. That's free speech at work right there.

And then there's the people on the street. Minnie Mouse and Iron Man were holding hands before I snapped that picture above. And this guy was standing on a median strip in a busy intersection of Times Square dancing and playing drums. He happily posed for the photo.

It's these small encounters in this big city that I remember.

This also happened to me today, during a transaction in Starbucks. I was buying a water, another customer interrupted me.

Woman: "Did you have laser or is that sunburn?"

Me: "You're very forward in asking questions to strangers."

Woman: "Well yeah", plus an eye roll.

Me: went on with my transaction.

Woman: "I thought you'd appreciate it that people actually talk to you."

Me: "What? You don't think people would talk to me? Really?"

She shut up.

Meanwhile my friend just drove four hours to talk to me.

Stupid people make me laugh.

Also they're intrusive, insulting and presumptuous. And no, people don't have a right to know or have their curiosity satisfied when it comes to questions about strangers' appearances or disabilities.

I'm such a note taker and picture snapper. Everything is a story, I reckon.

I arrived in NYC yesterday. I spent a couple of hours in Manhattan yesterday evening, but today is the day I immerse myself in the bustle and sounds. I'm heading to the Chelsea Market and the surrounding neighbourhood, and then to meet my good friend Rick Guidotti (I cannot wait!). Tomorrow I think I will explore my local neighbourhood of Brooklyn then see a show on Broadway. I love the amount of options awaiting me!

It's very cold here this time - snow has been a novelty for me. I'm much more comfortable rugging up than trying to keep cool in the heat and humidity of NYC in July-Augusr.

This time traveling I'm far more wary. I prefer to be home safely than exploring the cities at night. I've got a lot of writing done this way! I've always been wary of my surroundings and wanted to keep safe, but this time around I'm conscious that there's someone else on my life now, worrying about my safety from the other side of the world. I neglect to tell him just how unsafe some neighbourhood I've been in, because I know he will worry.

I can't wait to see what NYC has to offer me this time. I know that my perspective will change.

17 April 2014

I've been staying with DeDe and her beautiful family these past few days. It's been a great stay - very relaxing. We've eaten some amazing food (Maine lobster!), seen some sights and laughed a lot. It's been snowing too - my first time experiencing snow!

Here's some pictures as a teaser before I post more through Ichthyosis Awareness Month in May :)

14 April 2014

One of the best things about travelling is meeting new people. Some have and will become good friends, and many others are nameless. I usually talk to people on public transport, much to the fear of some of my international friends. Being from Australia is a good talking point - everyone wants to travel to Australia. A few people have asked me about geography, and a few others have quite a good knowledge of our current government. Two waiters wrote me some travel tips for New Orleans. People are so generous when you spend the time talking to them.

I really love observing people and talking to them to draw out brief stories. Curiosity comes with being a writer - everybody has a story. If I was a fiction writer I could weave some of these encounters into the story.

Here are some of the people I've met along the way so far.

The taxi driver who took me to my hotel in Auckland told me about his marriage. He described "an arranged marriage not a love marriage". He told me that his parents decided on who he should marry, and matched her with a girl in New Zealand. It took nine months to get to know his wife. "I would prefer the love marriage", he told me. "Because you should know each other perfectly." I asked him if he's happy?

I got chatting with my friend's roommates while she was at work. We covered so many things - education, career goals, the cost of living, meeting men... When I told one of Larisa's friends I'm Australian she immediately asked if I know Darren Hayes and I squealed and said of course I do! She quoted some lyrics and I told her about talking to Darren on his podcast last month.

My flight from San Francisco to Chicago was very early in the morning. I left the hotel at 3.30 am - catching a shuttle bus. I was scared of waiting on the street as the Tenderloin district was so dodgy (I think of pounded meat and quivering loins when Tenderloin is mentioned). But it was fine - the concierge waited with me and the driver helped me with my bags. I did not encounter anyone dangerous on the street. As usual, I struck up conversations with my fellow passengers - even so early! Some weren't as willing to talk as others. I met a couple from Atlanta who really want to visit Australia. The woman was talking about her skin condition, and her husband said the questions about it got so bad that he said to people "just don't come to my house". We didn't see each other's faces until the drop-off point, but it was amazing how a short conversation on a bus in the dark could produce conversation about such a big commonality.

I also caught a shuttle bus from Chicago airport to the hostel. There were only two of us on that shuttle - me and a woman who was about to run a marathon. We talked the whole trip about running and her work and I told her about my blog. She said she's started a running blog which is here. We will keep in touch.

The hostel serves a free basic hot breakfast every morning. I sat at a table with a young guy from Michigan, a Spanish traveller and a man from Germany. I got talking to the German man - his eyes indicated he might be blind, and he later confirmed he was. When I told him I'm going to the art gallery, he joked, "not a place for a blind man". He's been in America for six months, working as a volunteer on a reservation (a community of native Americans) in South Dakota. He told me that the adults on the reservation live in poverty - receiving $300 a month, and are homeless, unemployed and uneducated. Alcoholism is rife. I asked him if he thinks volunteering there helps the community get out of the cycle. He doesn't think so, saying that it's a historical culture that is hard to shift. He said he doesn't fix problems, instead exchanges skills with the community - doing something for the community and the people within do something for him. He wants to live in Russia in a trailer park, so he's free to travel and not tied down with a mortgage. What an interesting man!

I met an older lady on the bus to downtown Chicago who was all dressed up on her way to lunch. She was refreshingly progressive. She talked to anybody - she told me she was on her way to lunch, and have me some tips about the art gallery. She pointed out a beautiful church and said that even though she's Jewish, she visits that church at Christmas and celebrates too. "We all pray to a god you know. It doesn't matter that we're different."

The woman next to her asked me how I burnt my face. I said I didn't, and she continued asking more questions. I said I was born like this and there's no need to ask so many questions to a stranger. The older woman told her off, saying "its not nice to ask strangers about their appearance". She then said to me "the lady next to me told me I had lipstick on my teeth and now is commenting on your beautiful face. Of course, she's perfect." It was a great comeback and I thanked her for speaking up.

People speak their mind here. A woman on the bus in Chicago behind me yelled out to a stranger standing up: "your shoes look like shit. Is that a tiger?", and followed her off the bus to criticize her outfit further. The driver through his arms up and let out a hearty laugh, and is passengers laughed and were horrified all at once. It was a priceless moment.

13 April 2014

I bought a ticket to last night's New Orleans Kings of Leon concert at last minute. It was a resale and it meant I got a front row seat. I sat in the massive arena and it was the most at home I'd felt in New Orleans (I found it really tough in that city).

I think Kings Of Leon seemed like they enjoyed playing last night's concert more than they did when I saw them almost three years ago in Melbourne. There was some stage banter from Caleb, funny anecdotes (Caleb said that he first sang live at the Cat's Meow in New Orleans. It was karaoke with Nathan when he was 18. And when a woman flashed her boobs at them from the front row, he said to Nathan "we're onto a good thing!". Something has healed between them. They look happier.

While they didn't play my three absolute favourites (Fans, KnockedUp and Manhattan) they did play a huge amount of older material which was pleasing. I really loved Bucket, Milk, Radioactive, and their newish hit Supersoaker. Other notables were On Call, Crawl, Black Thumbnail, Charmer and My Party. I love dancing to Kings of Leon live.

The security team were fantastic - both the KOL staff and the arena staff. Friendly, polite, safety conscious and encouraging concertgoers to have a good time - unlike at many large Australian concerts I've been to. Two of the KOL staff remembered me from Melbourne and we had a chat. One called me to the VIP pit in front of the seated area, and also passed me a guitar plectrum.

The arena security staff had plenty of set lists to give to fans. The band also threw lots of plectrums and drumsticks out.

The 20 minute walk back to the city showed unity in fandom - it wasn't a rowdy or drunk crowd like I've been in during my time here. It reminded me of the walk back from Rod Laver to Flinders St Station.

The Kings Of Leon concert was a good end to an ordinary stay in New Orleans. Bring on the East Coast now - I've just arrived!

12 April 2014

I hate reasoning with drunk people about my Ichthyosis. No amount of explaining that I was born like this, or am not sunburnt, or am ordinary not inspirational will sink in to their alcohol affected minds. Sadly, one of the things I remember most is when I walked to a cafe in Melbourne on a Friday night in 2012 and a group of guys were sitting at an outdoor pub table with their dog. They were drunk and rowdy. The dog growled at me as I walked by. They cheered that dog on for growling at me, "that ugly bitch". Charmers.

I've given up going to some events because I know there will be alcohol and drug affected people there. I stopped going to the Big Day Out years ago because of the reactions to my skin - the comments and questions just got too tiring to really enjoy the music. Even people at smaller festivals can be trying - especially if it's a sunny day.

There's a huge drinking culture here in New Orleans. In bars, restaurants, music venues and on the street. The alcohol level feels different too - much stronger than what I'm used to. I'm sure standard drinks are just a blind measurement.

While I'm always in awe of my surroundings when I travel, I tend not to notice the stares and comments from passers by. And honestly, I've not had too many rude people here in America. But I have definitely noticed the way reactions to my skin have changed while in New Orleans.

Drunks stare blatantly. They snigger or burst out laughing. They are more brazen with their questions, they have a right to know. They react more in a group - loudly and intrusively. The point and turn their heads and get in my face.

Yesterday while on the food tour, three men, shirtless and intoxicated, circled me as I crossed the street, hollering "where did you get your tan? Can I have a tan like that?". It was unnerving. I didn't want to engage so I ignored them and kept walking. Some of the tour group asked if I was ok - and I truly, I was ok. It was merely an interruption in a good outing.

But these sorts of reactions do stick with me because I sometimes feel like my personal space and even safety is compromised. I never know how much someone has had to drink, or whether they're affected by drugs too, and how they might react if I respond rudely. And so I prefer not to respond at all.

Drunk people can also be extremely friendly - but it's polarising. There's either polite curiousness or inspirational worship, heroifying me for doing every day things.

I like a drink (or three) too. I had a wonderful time with some new friends I'd made on the food tour - we checked out the live music at the French Quarter Festival and then had a drink at the Carousel Bar (it's a moving bar underneath a carousel canopy, and drinkers sit in real carnival seats!).

And then at night I met some Aussies at another bar. We talked, they bought me drinks, we watched jazz and danced. And after four wines and a cocktail, I knew I'd had enough. The alcohol affects me differently here. It's strong, intoxicating. And I was overwhelmed by more people staring. So I knew I had to call it a night.

The drunk's reaction to my Ichthyosis can be likened to the way women are objectified on the street or in a bar - wolf whistles, loud comments and crass remarks. It's intrusive, rude and scary. And can really hinder a good time. It's often harder to witness these reactions sober.

They say people are at their most honest when they are under the influence of alcohol. The experiences I have detailed here make me wish that wasn't true. Last night was the first time I'd had more than one drink in a public place while in America. Limiting my drinks is a safety thing for me - both physical and emotional. Sometimes I leave abruptly, looking as though my carriage might turn into a pumpkin. It's usually because I've had enough of the drunks' reaction to my Ichthyosis.

10 April 2014

I'm in New Orleans. I'm feeling love and hate at the same time for this city. It's posh and ramshackle, sweet and sewage scented, sunny then blustery. It's always noisy - the sweet sounds of jazz are always around the corner.

I love the southern style food and the music. I love the sunny mild weather. Most people are friendly and customer service is top notch. Jazz plays in most bars - it's wonderful stumbling upon a live show. And the food is amazing. Amazing. Very little vegetables though. So far I've had an oyster po'boy, red bean and sausage soup, alligator, gumbo and bread pudding. Cheap and tasty.

But it's seedy, especially in the city. Bourbon Street has many strip clubs, female workers beckon customers in and burly guards holler to passes by, telling them they need to come in. Drinking is allowed in the street - only in cups with lids though. Intoxicated people walk the streets - some talk to themselves, others beg, and a few leer at women walking by. I'm scared to walk around at night.

The buses and street cars are cheap, as are taxis, but public transport is a little unreliable.

It's gator country too.

There is a mix of very very rich (lush leafy streets lined with mansions) and very poor (people wandering the street, taking shelter in median strips and beggars under bridges and along roads). Some people get dressed up to go out - ladies in crisp blazers and box hats (I even saw one woman on the street car with her hair in rollers). And young people loiter on street corners, playing loud rap music, drinking and acting quite intimidating.

It's like a different era.

My view of New Orleans changed when I went on a three hour guided tour. Honestly, I could have spent all day riding the bus listening to our tour guide tell us about the city. It was so worth the money. I booked my tour through New Orleans Adventure Tours (book and depart from 414 Canal Street). The staff at the outlet are friendly, and the host was a charm.

We went beyond Bourbon Street, which on first impression, might define one's New Orleans experience.

Our bus crawled along the perimeter of the French Quarter up Decatur Street where artists sell their art around the outside of Jackson Square and then past French market - a jumble sale of clothes, food, bric-a-brac, jewellery and souvenirs.

Mules pull tour carriages. They endure the New Orleans climate better than horses.

St Louis Catherdral across from Jackson Square is beautiful.

Then we were driven across to The Esplanade - it's lined with amazing houses - standing tall and colourfully proud. Our guide was extremely knowledgable and took pride in her city. She told us that in the 1800s, people could buy as much land as they liked - blocks were of different sizes depending on how much people could afford. When there was spare land leftover, it became a common park, cared for the residents in the street. She pointed out the houses of community leaders and famous people (Sandra Bullock's house is in the Garden District). Bad Pitt and Angelina Jolie also have a house here; as does Nicolas Cage.

We stopped at St Louis #3 cemetery where she explained the complex burial procedure, still keeping to tradition to this day. Families are buried in tombs above ground. The tomb is opened for the newly deceased's ashes to be placed inside. However the deaths must occur more than a year and a day apart or the family needs to rent a smaller space to put the body until a year and a day has passed. It was quite a complex, expensive process. The cemetery is lavish, with marble tombstones lining the grassy 'streets' - our tour guide said they were streets as they have names.

Next stop was City Park where we had some food (I had a hot chocolate and two beignets (a donut type pastry famous here) dusted so thickly in icing sugar my lap was white after I ate them.

We were given the opportunity to wander through the sculpture park - which was beautiful on this sunny day. My photos turned out so bright. City Park spans for acres - it's filled with lagoons that all meet (you can hire canoes), a train running through it, a playground and a children's theme park called Storyland - its entrance had giant nursery rhyme character statues welcoming visitors. I so wanted to go to Storyland! I loved the quirky sculptures there.

Finally we saw the devastation of Hurricane Katrina. Nine years on and the city is still recovering. Nine years on and locals believe the city will never be the same as it was before August 2005. Our tour guide showed us levees and safety points and the work that has been done to hopefully prevent the damage happening again. It occurred to me that the weather determines so much of whether businesses want to start up in New Orleans, and how hard it must be for people who might not have been financially stable before the hurricane to rebuild. I also thought about the great fear that this could happen again - Mother Nature is so uncertain.

Today when we drove through the streets, we saw big scale construction as will as families pitching together to build houses.

It was hard not to cry as we toured this area. People had nowhere to go. Grassy blocks indicated there was a house once there - shells and river debris still remain from the hurricane. Houses that did survive were looted. Over 1830 people died. Many died in their attics. The tour guide told a story of her friend's 18 year old son who waited on the roof for three days until emergency rescue came to get him by boat.

In the foreground is a slab of a house destroyed by Hurricane Katrina. While New Orleans is being rebuilt, it's a slow process.

The water line on this house showed how high the floods reached afrer Hurricane Katrina. Flood insurance used to be around $400, now it's $18000 in New Orleans.

Houses have been built up to 17 feet off the ground since Hurricane Katrina.

Flood gates to protect the city of New Orleans. If I remember rightly, the food gates were built after Katrina.

This statue is a meeting point in times of a natural emergency. Residents are then taken by bus or train out of New Orleans. There is no taking masses of people to city landmarks such as the SuperDome - it's not safe to get out of town. There are statues like this all over the city.

When I arrived yesterday and wandered down Bourbon Street, my first impression of New Orleans was that it's a little daunting, scary and not what I expected. But I'm so glad I did this tour and it showed me there's more than the seedy side. People are struggling. But there's so much happiness and culture to be seen. And there's new growth. Not only on the ferns and moss growing on the oak trees, but a thriving construction industry and lots of great retail and food outlets. As we drove through the Garden District today, our tour guide played us Louis Armstrong's What a Wonderful World. And you know, it is. It isn't so bad here.

I'm excited about tomorrow - though I'm always aware of my surroundings. I've got a cooking class in the afternoon and in the morning I will check out the french Quarter Festival. People say hello to you in the street - there's a warm sense of hospitality here, so I won't feel too alone.

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.